{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANIZACI\u00d3N: Fondo de Investigaci\u00f3n LGMD2i"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/10\/LGMD2i-Research-Fund.png\" alt=\"\" class=\"lazyload wp-image-2316\"\/><\/figure>\n\n\n<p><strong>NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>:         Fondo de Investigaci\u00f3n LGMD2i<\/p>\n<p><strong>P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <u><a href=\"http:\/\/www.lgmd2ifund.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.facebook.com\/jeanpierre.laurent.58173\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n<p><strong>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n<p>Nos centramos exclusivamente en LGMD2I<\/p>\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n<p>Conocemos un registro: el Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Aunque tiene su sede en el Reino Unido, es un registro internacional, adaptado a la naturaleza de las enfermedades raras. La LGMD2I es una enfermedad muy rara, lo que significa que el n\u00famero de personas afectadas es peque\u00f1o desde el punto de vista de los desarrolladores de f\u00e1rmacos. Dado que los estudios cl\u00ednicos avanzados requieren muchos participantes, disponer de un registro mundial ayudar\u00e1 a identificar un n\u00famero significativo de posibles participantes y aumentar\u00e1 las posibilidades de \u00e9xito en la inscripci\u00f3n en ensayos muy necesarios. Hemos apoyado econ\u00f3micamente este registro durante muchos a\u00f1os y se est\u00e1 convirtiendo en un gran activo para la comunidad LGMD2I.<\/p>\n<p><strong>\u00bfEs su organizaci\u00f3n una organizaci\u00f3n sin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ed, somos una fundaci\u00f3n privada sin \u00e1nimo de lucro.<\/p>\n<p><strong>QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n<p>Las personas con LGMD2I han influido en la definici\u00f3n de nuestro enfoque y misi\u00f3n.<\/p>\n<p><strong>\u00bfcu\u00e1l es la misi\u00f3n de su organizaci\u00f3n?<\/strong><\/p>\n<p>Encontrar una cura y ayudar a las personas con 2I a mantener su calidad de vida.<\/p>\n<p><strong>QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>No prestamos servicios. Financiamos la investigaci\u00f3n y ayudamos a poner en contacto a las personas con la informaci\u00f3n sobre la enfermedad y la atenci\u00f3n m\u00e9dica.<\/p>\n<p><strong>DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n<p>Hemos financiado el inicio de programas en todos los principales campos terap\u00e9uticos (terapia g\u00e9nica, c\u00e9lulas madre, ...), diagn\u00f3sticos y herramientas de investigaci\u00f3n (modelo de rat\u00f3n, registro, ...). Gracias a nuestra implicaci\u00f3n, el n\u00famero de investigadores en LGMD2I ha crecido constantemente en todas las regiones del mundo. Fue importante crear una cierta masa cr\u00edtica de grupos de investigaci\u00f3n; ahora es importante mantenerla...<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n<p>Financiamos cualquier proyecto de investigaci\u00f3n sobre LGMD2I que pueda acercarnos a una cura, y apoyamos el diagn\u00f3stico a gran escala. Creemos que el tratamiento\/cura apropiado para la 2I ser\u00e1 una combinaci\u00f3n de modalidades que corrijan el gen defectuoso y ayuden a revertir el da\u00f1o producido en los m\u00fasculos. Cualquier laboratorio que disponga de conocimientos y tecnolog\u00edas de investigaci\u00f3n que puedan aplicarse al desarrollo de un tratamiento para la LGMD2I deber\u00eda ponerse en contacto con nosotros.<\/p>\n<p><strong>C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Cualquier persona que tenga informaci\u00f3n sobre la enfermedad o est\u00e9 interesada en encontrar una cura puede ponerse en contacto con nosotros.<\/p>\n<p><strong>CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Para m\u00e1s informaci\u00f3n, p\u00f3ngase en contacto con  Dr. Jean-Pierre Laurent, Responsable del Programa, por correo electr\u00f3nico: <a href=\"mailto:jpl@lgmd2ifund.org\" target=\"_blank\" rel=\"noopener noreferrer\">jpl@lgmd2ifund.org<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0LGMD2i Research Fund WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[],"class_list":["post-2317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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